BBC Radio Scotland: The Kaye Adams show on  7 November 2016 included an hour long discussion of ME and the PACE trial.  Available to listen to until 6 December.

Speakers were an American writer Julie Rehmeyer, and the ME Association’s medical adviser Dr Charles Shepherd.

Short discussion starts at 1hr 38 mins
Main discussion starts at 2 hrs 7 mins

There is also a You tube version of long discussion.

BBC Radio Bristol: Prof Esther Crawley did a 20-minute interview with Dr Phil Hammond about CFS and her FITNET trial (and touched on PACE) on Sat 5 November 2016. [Dr Hammond works in her CFS unit.]

Listen to the recording – available until Sat 3 Dec 2016 – starts at 10 mins

Download the transcript

Margaret Williams responded: A response to Professor Esther Crawley’s broadcast on BBC Radio Bristol, 6 Nov 2016  She challenged Prof Crawley’s statements about:

  • the purpose of the CBT she will use in FITNET being to alter sleep when the leaflets she produces claims it is to change negative thinking
  • that very little is known about CFS
  • that evidence for CBT and GET is good and PACE was good science
  • that the Dutch FITNET studies showed high recovery rate for online CBT

In the New Scientist Prof Crawley writes in Time to end the damaging battle over chronic fatigue syndrome 4 November 2016:

“All those interested in progress on helping those with CFS should unite in the push to find therapies, be they behavioural or biomedical”

ME Action Press Release: #MEAction Denounces Use of CBT in Treatment for Chronic Fatigue Syndrome:

#MEAction, an international network of ME patients, along with other patient groups and scientists from around the world, condemn the waste of resources on such inherently flawed studies.  Arguing that an intervention that consistently shows null results at long-term follow-up is not worth pursuing further.

The proposed study – known as ‘FITNET’ – shares many flaws with the debunked PACE trial, which was described as “the height of clinical trial amateurism” by Dr. Bruce Levin of Columbia University. It was subsequently discovered that scientists misrepresented the efficacy of cognitive behaviour therapy and graded exercise therapy in ME patients — but only after a protracted battle to obtain the open-sourced data.

It’s “more meaningless research based on flawed assumptions and bad studies,” said David Tuller, of University of California, Berkeley.  “What a huge waste of time and money!  When will these people let go of their dysfunctional and delusional belief that CBT is the pathway to ‘recovery’ from this disease?  It’s complete nonsense.”     Read the full press release

A letter has been sent to the Bristol University ethics department and NHS trial coordinator, and posted online, requesting:

” a copy of the information that was/is provided to the parents/carers of children with CFS/ME, that are enrolled in trials carried out by the University of Bristol and The Royal United Hospital of Bath” re FITNET & MAGENTA trials

The writer also wishes to know if parents will be informed of the controversial nature of the trials, the failure of the PACE & FINE trials, other research into the condition, the purpose of the CBT and GET to be used,, possible harm, the reason for the lack of objective outcome measures etc.  Download the full letter

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